KICK-OFF MEETING ONLINE FOR HD-CAB
The Team Members of HD-CAB (Community Advisory Board) had last Saturday 4th their first globally Webinar with different advocates and partners.
The European Huntington Association (EHA), the International Huntington Association (IHA) and the Huntington’s Disease Youth Organisation (HDYO) are excited to officially announce their new project, called HD-CAB. As a coalition of partners, their main mission is to represent the voice of the global HD community and provide HD community experience to regulators, industry, researchers and governing bodies.
You can learn more about HD-CAB here
Article about EHDN Remote Conference
After attending the EHDN Conference of 9-11th September 2021, Astri Arnesen wrote an article that summarize all the new updates on the HD Clinical Trials. This are some encouraging news!
How “emotional brain” is affected early in HD
Our results demonstrate that parts of the brain that manage emotions, the so-called limbic system, is affected early in HD mutation carriers. These changes may contribute to the development of psychiatric and cognitive symptoms. In many cases these are the most troublesome symptoms for both patients and their close family.
Our findings show that it’s not only the nerve cells that are affected in HD, but also other kinds of cells, like oligodendrocytes which play a major role in facilitating the communication between different parts in the brain, explains principal investigator Åsa Petersèn.
The study is another example of successful international collaborations in the HD field.
As part of the European research consortium, IDEA-FAST is planning to conduct a large observational study with digital technology. The study is looking to develop new digital measures for fatigue and sleep disturbances for people with chronic diseases.Considering the importance of including patient voices in study designs a few minutes of your time would be highly appreciated.
To this aim, they would like to hear your opinion on how you think clinical studies using digital technologies should look like and to make sure the study is engaging and not too burdensome for participants with chronic diseases.